December 27, 2010

Doing what's best for...

While it's always a great time to see crowds of family and friends over the holidays, it's not always the easiest of listening environments for Hadley. I'm more proactive than reactive in these situations, mainly because the combination of excitement, sugar and high energy along with the listening challenges can be a recipe for disaster. While I normally give Hadley the time and space to make her own decisions, in crowded situations I'm usually ready to step in and speak quietly and directly to her, when necessary. For those family members and friends who generally see us during the holidays or at large gatherings, they may have the sense that this is how we always interact with Hadley, hovering and intervening. Hadley makes listening and communicating seem so effortless, it's easy for people to either forget that she lives with a very significant hearing loss and sometimes struggles.

Along with the holiday chit chat, I find myself answering questions about Hadley and her hearing from well-meaning, well-intentioned adults. For whatever reason, this year several people questioned whether some of my actions were truly necessary, particularly the act of physically moving closer to Hadley in large crowds to communicate with her. Couldn't I just sign? Rely on lip reading? It's such a chore to get up and move over to her; to quote one person, "sometimes you have to do what's best for mom", that there's a lesson for kids to learn in being put second. Why don't I do what's best for me? Certainly it would be simpler for me to mouth instructions across the room to Hadley, flip my hands or fingers a few times to get my point across. Why not?

Here's the deal: at nine years old, we're halfway through our time with Hadley. In just a few short years, she's not going to have a knowing adult keeping tabs on her from across the room, silently cuing and correcting her. These are the years where she needs us to intervene, so she knows what to do in the future when it's just her. We don't want her to develop simple coping skills, we want life skills that can carry her into adulthood and beyond. That may mean pausing my own conversations to help her now. I may be on high alert during new activities (like basketball this winter), not chatting on the sidelines but instead keeping myself available to clue her in now in order to allow her to be more independent later. Some might see this as hovering, but my intent is to get as much direct information into Hadley now so she can handle the world later.

So, yes: right now, we're doing what's best for Hadley. Our time will come at some point in the future, but we only have the present to get into Hadley as much academic and social learning that is possible. Forgive us if we let a conversation pause or lapse; if we take longer than what you think is necessary; if we intervene more frequently than you think you would, if in our position. And thank you to all those people who may not exactly understand why we do all these things, but support our choices nonetheless.

December 22, 2010

Happy Holidays!

...and Happy New Year to everyone! Thanks for reading our blog!

Stirling Snowman Christmas
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December 9, 2010

Telephone Time

As a preschooler, we made sure that Hadley regularly talked on the telephone to build up those pure auditory and listening skills. Dan called from work to ask specific questions about her school day, and she talked to other relatives frequently. Sometimes, when we were delayed in traffic, I handed Hadley my cell phone and had her explain to her therapist, Lea, why we'd be late to that week's AVT session. Hadley did not use the t-coil setting on her hearing aids, as she found it annoying, but we discovered that increasing the volume on the phone worked just as well. She did especially well with our old Uniden 900MHz cordless phone, so we invested in battery packs for that specific model to last us for years. With consistent exposure, she was turning into a pretty savvy phone user.

Then we had twin boys and I became, well, busy.

Hadley still uses the phone a few times a week but, as her language and people's expectations of her have increased, I've felt less confident in her abilities on the phone. Despite living in a world of texts and emails, phone skills are a life necessity. I've noticed improved phone conversations with the new hearing aids, which automatically switch to the t-coil setting when held up to a phone. On my long list of things I mean to do, I've been planning to increase opportunities for Hadley to use the telephone, but still haven't gotten around to it.

Yesterday afternoon, the telephone rang. It was a friend calling to talk to Hadley.

As I went to fetch Hadley in her bedroom, I was thinking about what I'd do. She's talked on the phone with friends before, but not recently and not with these aids. Plus, kids can sound a little slushy over the phone wires. Would I stay nearby in case she needed assistance? Hover? Suggest that she sit in a certain room to decrease background noise?

I handed the phone to Hadley, told her which friend was calling...and she took it and walked back into her bedroom, closing her door. Oh, the other option I had overlooked: letting her manage on her own.

A few minutes later, Hadley came downstairs, still chatting away. She found her backpack, took out her homework folder, answered her friend's question about math, said goodbye, and hung up the phone. Then she returned to her bedroom. End of story.

I have a tendency to overthink things, which (although, at times, useful) can be annoying. I'd love to know what they talked about; if Hadley controlled the conversation or if it was more equally shared; if she had to ask for clarification; if she misheard anything. I could make recommendations for the next time the phone rings for Hadley or suggest that she call a different friend every so often for regular practice. Or I could keep my questions to myself and let Hadley roll with it. I'll probably wind up somewhere in the middle, where I'll ask her to answer the phone for me more frequently and increase those opportunities more naturally.
Two useful tips for the telephone:

1. If you are in the market for new cell phones, consider those that have an intercom feature for calling between extensions. While I have no interest in installing a phone in Hadley's bedroom, I do ask her sometimes to bring an extension into her room. She might not hear me call her name with music on or the door closed, but I can page the extension and she'll answer.

2. While nothing replaces actual phone conversations, there are a few ways to practice without a partner. One that I particularly like is Cochlear's "Telephone with Confidence" program. Although designed by a cochlear implant company, their listening skills programs are suitable for hearing aid users as well. After calling into the 800 number, the listener can opt to listen to a short list of single words as well as a recorded paragraph, then go to the website to download the day's entries to read what was said.

December 8, 2010

Insurance Coverage for Hearing Aids

Most people are shocked to learn that hearing aids are not covered by health insurance in many states. While a typical adult hearing aid user might choose to upgrade hearing aids every five, seven or ten years, children receive great benefit from newer technology on a more frequent basis, like three to five years. Digital hearing aids-- even the basic models-- cost about $2,500 per aid. If your child has a more severe loss, the price tag creeps upward. Add on the cost of earmolds, batteries, and other accessories, and the total cost becomes gigantic. Health insurance provides coverage for annual hearing evaluations and the newborn hearing screen that gives many of us the initial diagnosis...then stops there. Hadley is just nine years old yet, in that time, we have spent about $20,000 on her ears.

There are several bills in the Massachusetts legislation right now that seek to require coverage for hearing aids. I have written many letters to members of our state and federal government about providing coverage for ALL hearing aid users, regardless of age, but I'm throwing my support toward any legal effort to provide some substantial coverage. The next legislative session opens in several weeks, and H910 is expected to be filed in both the House and Senate then. This bill is supported by the Massachusetts Hearing Aids for Children Coalition. Public support is critical to the success of this endeavor. Won't you please consider signing the petition and sending a letter of support to the Commonwealth?

December 5, 2010

Piano Concert

So many people (professionals included) think that a hearing loss prevents a person from enjoying music, let alone playing an instrument. Music has been a big part of Hadley's life from day one; taking her to music classes, joining a children's chorus, and practicing the piano are just natural extensions of her interest in music. The fact that music helped develop her auditory skills is just gravy.

Every year, Hadley performs at the Cranberry Hospice Festival of Trees. This past weekend, she performed two pieces on the piano, including the Skater's Waltz with another student. I've edited this video, as it involves another child, but Hadley is the student wearing the white shirt, playing the melody. Playing this duet was a challenge. Hadley received the music just last month and only started playing with her partner a week or so ago. They played without listening to each other and just raced to the end of the piece, losing the rhythm almost immediately. No matter what the teacher did, Hadley couldn't connect what she was playing to the accompaniment. I was beginning to think this was out of reach for her, right now (Hadley spends more time brushing her teeth than she does practicing the piano!).

Just a few hours before the concert, Hadley asked me to practice with her. We broke it down, section by section. We played it through, over and over, for about ten minutes. We were never perfect, but definitely improved enough so Hadley could hear how the two parts worked together. At the very least, I thought, Hadley was more confident. That could only help things.

Since this is not a made-for-tv movie, Hadley and her friend did not nail the piece. They kept it together until the final tricky part, but got through to the end. What I loved was how the two of them were visually checking in with each other (it might not be as apparent with the editing) as well as listening to attempt to correct themselves at the end. Fingers were flying, nerves jangling, but both girls used their own hearing to make music together.

December 3, 2010

Support John Tracy Clinic's Quest for 250K

In addition to weekly auditory-verbal therapy sessions, we also participated in John Tracy Clinic's birth-to-five distance learning program for several years. This free program provides very detailed and very practical instructions each month on how to promote oral language in your hard-of-hearing child. In return, we submitted an update on Hadley's hearing health and speech progress, answering specific questions that corresponded to the monthly lessons and recommendations. A JTC professional responded by email, following up on any of our questions and providing individualized suggestions based on the information we shared. While it's been years since we participated in the program, I still use many of their worksheets to explain hearing loss to Hadley's teachers each year.

In addition to the online program that helps families all over the world, JTC provides audiology, early intervention and academic services to families living in Southern California. They are currently in the running to win $250,000 through the Pepsi Refresh Project to further fund their preschool program. Please take a moment to vote for them each day during the month of December.